I have just joined this forum. I have been recently diagnosed as ET JAK2 positive following a spell in hospital and the loss of a toe due to a blood clot. I had several blood tests with high platelet counts over a long period of time before diagnosis. The last platelet count was just under 800. I have been given Hydro at 500 mg a day for 5 days a week and a blood thinner Clopidogrel. The worst symptoms are tiredness and lacking energy (no headaches) also high blood pressure (not seriously high) and red flushes, particularly in the face. In the past I have been diagnosed with Polymyalgia Rheumatica which a steroid Prednisolone dealt with although I am taking a small dose of this (7mg a day) presently. Also I have had dizzy spells, double vision and almost fainting although this usually passes quickly. There are so many questions about ET but I would like to know if anyone has these symptoms and are they usual for ET. Also do the symptoms get better in the long term with taking Hydro.
Any advice would be appreciated.